Constance Ore is a retired Teacher, Choir Director, and Organist. And a formidable cook.

March 9, 2006

Filed under: — Constance at 9:43 am on Thursday, March 9, 2006

We knew that the visit to the NU Med Center would be hard. We had gotten information in the mail about stem cell transplants, and after reading it, both Charles and I were silent, greatly daunted by the descriptions of the procedures and the high possibility of a life afterward which would contain ongoing misery. That wasn’t the hard part, however, it was knowing that we would once more be looking at the reality of the disease and the possible outcomes.

It was rainy and gray, good for the land, not as good for the spirits. We picked up Heidi and arrived for the first blood draw by 1:00 PM. The Med Center is huge and teeming with people of all ages, and one supposes that the subject is principally cancer. We were shown a video about stem cell transplants and it augmented the written material we had read. Then we met with Dr. M. DeVetten, a highly respected leader in stem cell transplants and in MDS. He was a little man, not much taller than myself, with a turned up nose, and very keen light brown eyes. He had the already substantial folder on my medical history with the illness. We visited again about its’ beginnings, diagnosis, and present treatment. Then we spoke of options. There aren’t many options, just three. The one, which everyone has, is to do nothing, and that is unacceptable because it would be inviting death’s arrival as surely as driving a car blindfolded and at a high speed in heavy traffic. The second is the chemo therapy of Vidaza, which I am presently doing, and the third would be pursuing the stem cell transplant.

We talked everything through again, and at this time, we simply do not know what the future holds. Always, the percentages of surviving the disease beyond a year hover around 25% – 30%. Therein lies the hard part. One of the key indicators will be the next bone marrow aspiration at which time the “blasts”, those useless white cells, will be measured again. If they have increased, it will mean the Vidaza is not working as well as it must, and a stem cell transplant would be the only remaining option. How great the wisdom of our lives getting launched without the termination date stamped on the underside of our arms! Now I am thinking of all those conversations that have begun, “If you had only a year to live. . . . ” and how the thoughts could spin about and one could enjoy the possibilities because they never really applied. On the way home, we once again affirmed that we had hope in the future because of our faith in God’s ultimate plan for us. . . . a lifetime of care, great gifts, good days. . but oh my, it is not easy.

3 Comments

64

Comment by Irene Beethe

March 9, 2006 @ 10:42 am

Dear Connie,
Yesterday, I spent the day at school with Ivan – working with kids – and thinking and praying for you and Charles and your trip to Omaha. Thank you so much for sharing the day with us, although not easy in any respect. You continue to be in our thoughts and prayers each day…many, many times! Your expression of faith in God’s plan for each of us is truly a gift to all who read it.
When Nathan was a baby, my father wrote a quote to me from a New Year’s Eve sermon…we’ve looked at it many times and I pray that it can provide you with a bit of assurance during these days – just like you have shared with us before and continue to share with us now.
“And I said to the man who stood at the gate of the year, ‘Give me a light that I may tread safely into the unknown.’ And he replied, ‘Go out into the darkness and put your hand into the hand of God; That shall be to you better than light and safer than a known way.'”
I know that you trust in God’s love for you…and better than us putting our hand into His, He already holds you and WON”T let go….ever!
God’s peace and joy be yours today!
With love in Him,
Irene

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Comment by Tom Ramsey

March 9, 2006 @ 8:54 pm

Dear Connie and Charles…For whatever it’s worth…last year at the National pastor’s Conference, one of the presenters told of his struggle with ALS. During that time of upheaval, through much pain of all kinds, he developed 4 prayers he prays daily. Those are my prayers for you.
1. Lord, give Connie and Charles the grace to face Connie’s illness and go on living.
2. Lord, give Connie and Charles the wisdom to know what to do.
3. Lord, give Connie and Charles the faith to believe that you can heal Connie.
4. Lord, give Connie and Charles the courage to be thankful.
Of all the many, untold numbers of reasons for which I am thankful, meeting and knowing you two, for however brief a period of time, ranks right up there.
God’s continuing blessings to you…Jesus loves you…and so do I!…Tom

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Comment by Becky Pfabe

March 9, 2006 @ 9:35 pm

Connie and Charles,
I’ve been reading your notes every day. I feel like I am privy to very private moments and feelings, especially when I read the notes others have written to you. WOW! You are SO loved by many! What a great thing to know how many people are praying for you. You are on the prayer chain at First Lutheran Church in Lincoln. Every Wednesday I sit with a little boy during church choir practice. At the end, the kids are asked what they want to pray for. Usually it’s things like their loose tooth or an ill sibling. Privately, I always say, “for my choir teacher who is ill”. When I think of the time we spent with you and your family while growing up, it’s rather amazing. I guess you could use that as an example of “it takes a village to raise a child”. You were part of my village. I also have been impressed with the importance of faith in God in the face of illness. I’ve seen it quite a few times lately, and what I have seen proves that faith in God gets people through a health crisis in a truly amazing way. It’s hard to describe in words, but what I see deepens my faith. I love you both and will keep praying for you, and will continue to read your notes daily.
Love, Becky Pfabe

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